A Day in My Life as a Cardiac ICU Mother

The day starts early, even though you’ve been up for a while now. You hoped to fall back into sleep, but your mind is too busy wondering. You grab the phone and hit the preprogrammed number for the cardiac intensive care unit (CICU). A quick hello to your baby’s night nurse, and then you hold your breath for a good update.

That update determines how the next few hours go. If your baby is having a difficult time, you rush through the morning routine and take the most reliable route for traffic. If you hear “good night overall,” you get ready and sneak in a few moments of normal with the other kids at home. You work on a distraction to avoid the cry of your 3-year-old who misses you so much and wonders where the baby in your tummy went. It’s a painful departure either way, whether rushed or slow. Half of your heart was left at the CICU the night before, and half of your heart is about to be left here at home as you see the smiles of bravery streaked with tears from the children you’re leaving behind.

A few tears of your own are shed as you head off. It feels so strange to sit in line with the cars around you as they head off to work, drop off kids at school and get ready for their day. You get angry at cars that cut you off and think, What is your hurry? Don’t you know where I’m headed! How can you cut me off when I’m headed in to see my sick baby? The ride is long, but it gives you time to disconnect from home and prepare for the 12-plus hours ahead in the hospital.

As you arrive and near the room, you wonder what you’ll find. It’s too early for rounds, so a room filled with a medical team now is not a good sign. You learned that the hard way after your first night home ended with a middle-of-the-night trip back up because your baby had stopped breathing. The image of a busy room and your husband standing outside, hoping all will be OK, is still burned fresh in your mind. So again, you round the door and hope for a room with just a nurse there. Sometimes it’s a familiar face, sometimes a new face. No matter who it is, you’re grateful for the care they give her.

Each day is different because each day has new challenges. But each day you cry a little and hope a lot. You’ve come to know some of the faces you see in the rooms you pass, or in those who pass your room. You overhear parents in the family room or cafe talk in similar terminology as you. You know the struggles they have.

When you walk to the water fountain for a drink, you see a mother crying heavily, overhear “only did chest compressions for 20 minutes” and you see the distraught family members waiting outside the doors to come in and comfort one another. You know that could be you in an instant. You hold your breath and say a prayer for them.

A walk in the other direction and you see a baby who has a dark room, and you have never, not once, seen anyone but a nurse in their room. Your heart aches for the family because you know they’re in such a difficult spot. Do they live hundreds of miles away and can’t be here because they have no help with their family? Do they work and can spare no time away because they can’t risk losing their insurance? Instant gratitude for the opportunity to be here with your baby. Prayers for those away from theirs.

Time does not pass the same in the CICU. Sometimes 10 minutes can see like three days. Sometimes three days goes by so quickly that you can’t distinguish one day from another. There are always people in and out of your room. Out of necessity, you have to figure out how to come to terms with seeing your baby in pain. Seeing your baby with her chest open, too swollen to be closed due to receiving open-heart surgery at only 4 days old. You have to remind yourself that if she had not had all this, you would no longer have her.

You do what you can to comfort your baby. The motherly urges to hold, cuddle and feed her, those are still there even though you see it’s physically impossible to do. You do what you can to soothe your baby and feed these urges. You cradle her tiny head, hold her hands and feet, and give her drops of breast milk you’ve been so busy pumping and storing in the hopes she’ll pull through this and will start eating someday soon. It’s hard to think too far into the future. Your baby was born with heart failure. Their future is a big question right now. You are just happy for today.

As the sun lowers in the sky and hints to the approach of evening, you realize you haven’t been aware of another day passing. Was it nice outside? When did the trees turn a deep red and orange color? Did the day go well for the kids at home? Then you realize there’s just a few more hours until you’ll say goodnight to your baby. With a little anxiety, you go over to rub her head — not to comfort her, but to comfort yourself. You wonder if tomorrow you will be blessed with another day with her.

Night rounds are quicker than morning. You thank your team causally, but you really do mean it. They’re keeping your baby alive. It starts to get dark, and you notice you’re hungry. Did you eat today? You start to ache from standing next to the crib and sitting on the uncomfortable chair. Your hands hurt from the constant sanitizing you do. You wish you could take on a thousand more discomforts if it meant your baby would feel better. You pray for her pain.

You stay until you have meet the night nurse and you are ready to leave, but truthfully, you are never ready to leave. You reluctantly say goodbye and point to your number on the board. “Please call us if there are any changes, and we will call to check in.” You kiss your baby’s head, bless her, say your family’s goodnight prayers with her and then kiss her again. You know if you don’t turn around and walk out the door right now, you never will. So you turn quickly and give a quick look back. “Be good, baby girl! See you in the morning.”

Sigh as you walk to the car. The skyway is not that crowded now. As you step in the car, you look out at the hospital and the buildings. Half of your heart is there. Going home to the other half now. Again, the ride gives you space to disconnect before walking back into your house. When you walk in, loud cheers of “You’re home.” You cuddle those little ones extra tight and thank God for them. You try to sort through mail, help with homework and hope you can squeeze in as much as you can before finally resigning to bed. A quick call to the night nurse to settle your mind in hopes you can to sleep. Say some prayers, fall in and out of sleep, and anxiously await for the morning to come when you can do it all over again.

Follow this journey on Caringbridge.